The Spectrum of Hope: An Optimistic and New Approach to Alzheimer’s Disease and Other Dementias

299 Pages·2017·2.22 MB·English

by  Gayatri Devi

THE
SPECTRUM of HOPE
An Optimistic and New Approach to
Alzheimer’s Disease And other dementias
GAYATRI DEVI, MD
WORKMAN PUBLISHING
NEW YORK
For my incredible daughter, Ginny.
May she find the practice of medicine as wondrous as I have.
Acknowledgments
Thanks to my agent, Laura Yorke, for many things—her fine wit, her quick
intelligence, her love of “Old Cubans,” her astounding loyalty, her indefatigable
and super editing skills, and her belief in me.
Thanks to my dear friend Harry Lodge, who was involved in editing the nascent
version, for being a fantastic colleague and internist, for his endearingly
refractory nerdiness, and for sending me many of the patients whom you will
meet.
Thanks to Rae Alexandra, for patiently transcribing my dictations, for reading
aloud the final product in her glorious Welsh accent so I could hear how the
stories sounded, for her keen sense of irony, her wonderful editing suggestions,
and her fierce love of Besito and all things canine.
Thanks to Workman Publishing and Suzie Bolotin for embracing and supporting
the idea of this book from the get-go, and to Margot Herrera for being a
sounding board and editor, and for asking the right, detail-oriented questions.
Finally, I would like to thank my patients—my adored, wonderful patients—and
their caregivers. They continue to teach me so much—humbling me with their
courage, strengthening me with their resilience, and inspiring me with their
boundless generosity of spirit. To them, I owe my unbridled joy in the art and
practice of medicine, and to them, in truth, I owe this book.
Contents
Introduction
1. Do I have Alzheimer’s?: Identifying Memory Disorders and the Importance
of Early Diagnosis
2. I have Alzheimer’s: Now what?: Alzheimer’s as a Spectrum Disease—and
Using a Multipronged Treatment Approach
3. Whether I have Alzheimer’s disease is nobody’s business but my own.:
When and How to Share the Diagnosis
4. Do I need to quit my job?: Continuing to Work with Dementia—and
Knowing When to Retire
5. Who says I can’t drive?: Maintaining Independence and Dignity in
Alzheimer’s
6. Will I pass this on to my children?: The Genetics of Alzheimer’s—and Paths
to Prevention
7. Do I face special challenges as a woman?: Gender and Alzheimer’s
8. I just don’t care about anything anymore.: Treating Depression and Anxiety
in Dementia and What to Do About Apathy
9. I’d be crazy not to be paranoid!: Apraxia, Paranoia, and Other Frustrating
Behaviors, and How to Effectively Communicate When Logic Doesn’t Work
10. I’m not lost—I’m on the road less traveled.: Why Not to Worry About
Wandering
11. I can’t take it anymore!: Advice to Caregivers: Self-Care, Stress Reduction,
and When to Seek Additional Help
12. I think my husband is cheating on me with my aide.: Navigating Sexuality:
Suspicion, Affairs, and Special Arrangements
13. Should I go to the hospital if I’m sick?: Treating Medical Illness Alongside
Dementia
14. Whether you like it or not, here’s what I want.: Maintaining Individuality
in the Face of Alzheimer’s
15. I would rather die at home.: Living and Dying with Dignity—in the
Comfort of Home
16. Gee, that must be depressing!: My Life as a Physician Specializing in
Alzheimer’s—Trials, Rewards, and Lessons Learned
INTRODUCTION
A New Perspective on Alzheimer’s
Disease
“I feel like I am being completely controlled,” said my 78-year-old patient Mary,
a retired college professor with a brunette bob that neatly framed her dark eyes.
She looked sadly at me, adding, “What I say makes no difference. Every aspect
of my life is being managed. What is the point of living if things are going to go
on like this?”
Her mood that day was very different from when I’d last seen her. What had
happened in the interim? I soon found out. Her ophthalmologist, at the behest of
Mary’s daughters, had told her to stop driving.
“Her vision isn’t good anymore,” said one of Mary’s daughters, who had
accompanied her mother to my office. “And Dr. Smith felt that Mom wasn’t safe
behind the wheel.”
“But my eyesight hasn’t changed in ten years,” Mary shot back. “I’ve had the
same prescription since before your father died!”
Her daughter gave me that look that I have come to know so well, the It’s the
dementia speaking; ignore what’s being said look. It’s a look that I see daily on
the faces of caregivers when patients assert that they are still working at the job
they retired from years ago, when they insist they haven’t had breakfast that
morning, when they say that their children have stopped calling.
It’s easy for me to recognize the look, and patients themselves quickly
become aware of it as well. Not surprisingly, they are angry when their views,
regardless of how erroneous they may be, are dismissed.
“Don’t you give her that look!” Mary said, catching her daughter in the act.
“You girls are treating me like I am a child. I am not a child, and I refuse to be
treated like one!”
Mary turned back to me. “He acted like I was not in the room,” she said,
referring to her ophthalmologist. “He talked to my girls like I wasn’t even there.
His behavior was simply unacceptable. No one can keep me from driving. I want
my car back. There is nothing that suddenly went so wrong with my vision that I
can’t drive.”
In this case, it wasn’t my patient’s vision that prompted taking away the car
keys—it was her dementia. Mary’s daughters had asked the ophthalmologist to
tell Mary her vision was impaired to keep her from driving.
Mary was the unwitting victim of the medical profession’s difficulty
understanding the variability characteristic of Alzheimer’s disease. Having
worked in the field of neurology and dementia for more than twenty years, I
believe more and more that Alzheimer’s is not a single disease entity, but rather
a spectrum disorder that presents with different symptoms, progresses
differently, and responds differently to treatment, with different prognoses, for
each person. Mary’s Alzheimer’s was different from the Alzheimer’s that
affected Jack or Jill or Mike, just as Susan’s stroke was different from Sam’s.
Post-stroke, Susan may be able to drive but unable to speak, whereas Sam may
be able to give a toast at the Friars Club but needs crutches to get up to do so.
Alzheimer’s too affects different parts of the brain in different people, despite
the fact that almost everyone with the disease eventually develops significant
memory problems. So Mary’s driving skills may have been unaffected by her
Alzheimer’s even though she may have trouble finding words. And Jack may
have had some fender benders as the result of his Alzheimer’s, despite remaining
the life of the party. Jill’s Alzheimer’s may progress rapidly and aggressively,
while Mike’s might progress slowly.
Unfortunately, the differences between the various subcategories of
Alzheimer’s are lost when patients get tossed into the general diagnostic inbox.
Although some patients with Alzheimer’s become completely immobilized,
most patients on the spectrum are living in the community, babysitting a
grandchild, finishing up chores, or possibly even running for president of the
United States (as we will read later). However, because Alzheimer’s is still a
poorly understood disease and because one’s recall bias tends toward severe
cases, the people we remember with the condition are often mute and using a
wheelchair, suffering from advanced illness. When we think about the condition,
we will not recall the absentminded storekeeper or the lawyer who did a good
job with cross-examining the witness on the stand. We have not yet learned to
associate Alzheimer’s disease with functioning individuals, although this is, in
fact, the majority of patients.
Time and again, patients and caregivers who are worried about the potential
ravages of Alzheimer’s or another form of dementia make decisions based on
fear or emotion, rather than on facts. I’ve come to realize that it is not only
patients and family who react in this manner to a diagnosis of dementia—
physicians and other health caregivers do too. I have been as guilty of this as
anyone else. Patients themselves, confused and unsure about what to expect,
may decide to fold up their lives like used notebooks and file themselves away.
In allowing this to happen, we are doing ourselves and society a disservice,
depriving patients with dementia and their communities of years of fulfillment,
pleasure, and purpose-driven lives.
As I mentioned, I view Alzheimer’s as a spectrum disorder. Furthermore,
Alzheimer’s is a multifactorial disease, which means that there can be many
reasons that someone develops symptoms. In some cases, genetics may play a
role, but lifestyle choices and myriad other factors can also lead to the condition.
That one of a set of identical twins can get Alzheimer’s while the other stays
healthy is testament to this fact.
Because so many factors can contribute to a person developing symptoms—
and because Alzheimer’s presents differently in each person—I believe in a
treatment approach that is tailored to the person and the subtype of disease they
have. One size does not fit all for diabetes or strokes, which are other
multifactorial illnesses, and one size does not fit all for Alzheimer’s.
In the sixteen chapters that follow, I address a variety of common issues that
come up in the care of patients with Alzheimer’s and other dementias and
attempt to answer the many poignant questions that I have been asked over the
years.
“Should I tell my family and friends about my diagnosis?” a grandfather of
four asks.
“I love what I do! Can I keep working?” asks a surgeon.
“Can I stay in my apartment? Or do I have to move into a home?” wonders an
80-year-old woman without any family.
“Should my children take over my finances?” asks the meticulous accountant.
“Who says I can’t drive?” asks Mary.
“If it’s not safe for Mom to drive, how can I tell her in a way that doesn’t
break her spirit?” Mary’s daughter asks.
“Alan has become paranoid,” his wife tells me. “He thinks I am stealing his
money. Why would I do that after forty years of marriage? It makes me so sad
that he would think that! What should I do?”
“She screams when she gets into the shower, and it breaks my heart,” a
concerned husband says.
“He doesn’t think he has any problems with his memory. He won’t go to the
doctor!” a son says in frustration.
“Sally keeps asking to go home, even though we are at home,” Ed says.
The questions and concerns are endless. I try to be prepared with answers
wrought from science and experience.
The fundamental question is this: How can a person maintain dignity even as
aspects of who they are begin to fragment and dissolve? In pursuit of an answer,
I have filled the pages that follow with practical advice on how to tailor one’s
approach to Alzheimer’s and other types of dementia to suit the patient and their
particular Alzheimer’s experience. My goal is not to paint a rosy picture of
Alzheimer’s but a realistic one based on my practice.